Thank God it's Friday! This week has been so tiring! The first weeks back always are I think. I had my first week of A-level Biology, and i am really pleased to say i actually understand and enjoy it - well so far so good! My coursework for H&SC though is taking ages, there is a lot of it and i really want to get it over and done with! Its times like this i realise i prefer exams! ( yes, im a geek :/ haha)
My health has been good! Apart from my immune system. My consultant took me off my immune system replacement infusion for 7 weeks to see if i had started making my own cells but after taking what felt like litres of my blood we flound very very little immune cells in my blood. Which means i am not making enough Immunoglobulin cells and my immune system still does not resopnd to vaccines. So at the moment i am at very high risk of infection and im feeling tired due to the lack of immune cells. I feel so much better on treatment so hopefully I can go back on it, this will not only make me feel better but actually help me stop getting infections that a 'normal' health person could fight off. As you know chest infections for me now are very risky, my lungs cant handle it and it puts my life in real danger. We as a family now know to prepare for the worst if i get a chest infection, but i have also learnt to start extra antibiotics as soon as i get any symptoms of infection or a cold and this helps it stop being so severe.
One thing that has upset me this week is going through my old care plans and things from my first year at college, i use to stand transfer and be very independant but now im hoisted and cant put any weight through my legs or sit up on my own or itch the top of my head! And because i dont have an 'offical'diagnosis of a progressive muscle disease, my OT & physio's (who are new to me every year) ask me to stand transfer or sit on the end of my bed and they wonder why i look at them as if they are idiots! My muscle biopsy was abnormal but they didnt know if it would progress or stay static... and as we have found out it is obviously progressive as the ammount of physio and work i have put in for me still to get worse shows this. This does upset and scare me a litttle but then again, its just something else to make me more determind to suceed in life.
I have my first appointment at the The national hospital for neurology and neurosurgery Squeens Square London on the 2nd October so im actually looking forward to see what they have to say, a fresh pair of eyes on my condiditon might actually give me a diagnosis.... well, thats what im hoping! wishfull thinking i know lol!!!
So overall this week has been ok! I just hope luck stays on my side and i dont pick anything up from these germy college people!! Hahaha!!!
I just want to say that my best friend Amy had gone off to Uni to train to be a kids Nurse!! She will have the time of her life and make an AMAZING nurse!!! I am very jel, as this would be my own dream job so she is gunna have to do it for both of us!!!! LOVE YOU LOTS AMY and Good Luck!! I will be over to your house to invade very very soon!!! ;)